Monthly Archives: January 2016

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

Note:  No sponges were harmed in the taking of that photograph.  And no, that’s not me.

You and I?  We’re sponges.  Every living creature is in their own way.  (And of course sea sponges really are sponges.)  From the moment we’re born we absorb everything around us.  We use our five senses.  We use the memory bank that takes up a portion of our brains.  We use the curiosity that takes up another portion.  And the logic.  Then, when necessary, we concatenate all of those receptors into a cohesive thought.  Or a new idea. Or an emotion.

And each of us is creative.  Oh, I know some of you might say, “Nuh huh.  Not me.”  But you are.  There are things we do every day because of TN that are creative.  The way we shield our faces, or put on make-up, or shower (or talk, or eat, or…)  The way we share about our condition on social media.  And things not related to TN like putting zucchini in brownies so your kids eat veggies.  Or fashioning a cup holder for your car out of a wire coat hanger.  Okay, I totally made those things up, but you get the gist.  But what we need to come up with those ideas or strategies is inspiration, whether it comes to us like a bright light bulb or in the case of TN, like a giant frying pan to the face.

I write but I’m not a writer.  Not really.  If the grammar police were to be perusing my blog I’d get a life sentence (unintentional pun there, but a good one).  I write as if I was having a conversation in a bar.  I write the way I speak.  And I break a lot of writer-type rules.  But lately I’ve found myself all wrung out.  Living with this condition has really limited the opportunity for inspiration.  I’m not just talking about my blog, but other writing I do as well.  And come on, how much can I really write about TN?  I think I milked that cow dry a long time ago.

It’s hard though.  I’m not talking about milking a cow, that’s just a metaphor.  I mean the lack of new inspiration.  I spend long hours where I could be writing doing other things.  I reorganize a lot, which I suppose is sort of creative.  I stare of into space – so, so not creative.  I’ll get the glimmer of an idea but it will trail off.  Or I may think of a character but not have the wherewithal to figure out the story.  The meds contribute to that fogginess, I’m sure, but so does the stagnation; the feeling that I’m standing at the side of the road watching the cars zip by.  I’m on the road, yet I’m not a part of the traffic.  And  I ain’t going nowhere.

I’m hoping that come spring I’ll get some of my creative mojo back.  That like the tulips that burst forth from the ground, I will find the story that goes with that character, or be able to follow that idea to see where it takes me.  And I truly hope that all of you who are kind of in the winter doldrums find that same energy this spring, regardless of how you use it.  But for now, I guess I’ll have to settle for using my lack of creativity for the creativity I need to write a blog post about creativity.

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

“Like soldiers in the winter’s night with a vow to remember.  No retreat baby.  No surrender.” – Bruce Springsteen

I took my brother to see Bruce Springsteen & The E Street Band’s “The River” concert last Tuesday.  I wanted to write about it once I got home while it was fresh in my mind, but the show took a lot out of me. By the end of the first song, I was at pain scale 9, which is where I’ve pretty much stayed from then until tonight.  I wouldn’t do a thing differently though, even if I’m just now alert and focused enough to write about it.  I’m trying hard not to surrender to this condition even if it lands me, immobile, on the sofa for a few days.  This entry is part concert review/part I-live-with-TN post, so I hope it all makes sense.

Springsteen isn’t someone most people would think I have cataloged in the jukebox in my brain.  I’m not the fist-pumping, arena rock kind of person most of the time.  But I’ve had a special place in my musical heart for the Boss ever since seeing him live in 1980(-ish). I’ve attended dozens of his shows since then and took my brother this time because seeing Springsteen play live is something I think everyone should do at least once.  And he never disappoints (Bruce or my brother).  And there is a unified spirit among his audience, regardless of age or background that adds to the electricity.  Mid-way through the show, I accepted the fact that my brother isn’t quite as musical as I am.  He hardly moved.  Not even a toe tap. Meanwhile, the lady on the other side of me had an interpretive dance routine for every song, which sort of served to balance things out.

What drew me to Bruce’s music when I was a teenager are the same themes that many “punk” bands sung of – and those were more in my musical wheelhouse.  The sense of dissatisfaction.  The want, no make that the need, to be a person whom we are struggling to define.

“I want to change my clothes, my hair, my face…”

Who didn’t feel that way at some point?  Who doesn’t occasionally feel that way now?” Okay, I think I’ve always had pretty good style, but I’ve certainly always wished I had better hair.  And the “face” part has taken on a whole new meaning in these past years. But don’t get me wrong.  I’d never want to trade my face with anyone.  No one deserves to be in this much pain.

Springsteen’s music also speaks of the search for a new place.  Somewhere, although yet unknown, where we can live a better life; someplace that is different from whence we came.  A place where we belong be it in the physical sense or something more.

“Together we can break this trap.  We’ll run ’til we drop, baby we’ll never go back.”

I’ve always felt that way, and these days, that feeling has changed meaning for me.  In high school it was about the desire to find someplace less conservative than where I was raised.  To break out of my town.  Over the years, I’ve still had the desire to find a place – the place – where I was always meant to be.  My mystery home where I am totally comfortable with the world around me.  Where I am totally comfortable with me.  That’s a bit of a tall order these days due to the TN.  Now I just want to get to a place where I can be at pain scale 5 everyday.  That’s doable.  That’s not a pipe dream.  It’s just that getting there has turned out to be a very, very long road.

“You can hide between your covers and study your pain…”

Part of this trek to a better (and less pain-riddled) life for myself has been to accept my pain, as I spoke of in a previous post.  My brother and I were talking in the car and I told him that being in pain is now as much a part of me as my hazel eyes and left handedness. I no longer wonder if it will happen, I just assume it will happen.  That’s my coping mechanism and it’s helped in a weird way.  I knew the concert was going to pain me – I always sing every song at the top of my lungs – and the fact that it was only about 10 degrees out didn’t help.  Did I have thoughts of “stop what you’re doing you dope,” and “man, you’re really going to feel worse in about an hour,”?  Yeah I did.  But this was a time when the pain wasn’t going to stop me, for, even in pain, singing along with a huge crowd to a great band was something I needed to make me feel alive once again.  I did, however, seriously consider punching the interpretive dancer in the kidney, but I realized getting arrested would mean that I wouldn’t have my nighttime meds.

As for the show itself, well, I can’t be unbiased.  This is the second concert where I’ve seen Springsteen do a whole album start to finish, and The River was an ambitious undertaking.  It is a two-album set that goes from subtle songs to barn burners and back again.  A mixture of joy and sadness, anger and resolve.  And, Bruce being Bruce, there were plenty of extra songs thrown in to ensure that the crowd had three-plus hours of fun.  My favorite song was, “Drive All Night,” where Bruce’s proclaims his love “heart and soul” in a way that is both plaintive and insistent. I wish someone would sing like that about me.  The end of his five song encore was divined to get everyone moving and singing and that it did.  As “Dancing In The Dark” segued into “Rosalita” before finishing off with an extended version of “Shout”, the crowd grew more alive with each note.  And even though I probably went through two tubes of Orajel and way too many meds, I was there, as I have been for thirty-five years, dancing and singing too.  And it was worth it.

“It ain’t no sin to be glad you’re alive.”

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

People who hear about my current living situation will often say something like:

“You don’t work?  I bet you feel lucky.”

“Wow! You must have some fun days!”

“Gosh! You must have buckets of money!”

Well, I am coming to you from the sunny beaches of San Tropez where I spend my days casually strolling the beautiful landscape and my evenings dining at quaint bistros.

No, no I don’t.

And that answer can be the reply to each one of those statements up there. It’s true.  I don’t work, but contrary to what some people may think, not working is not, not working.  (I spent a while figuring out if that was grammatically correct.)  Living with TN is a job unto itself; one which has a taskmaster for a boss and little promise of any bonus.

Fact is, having TN is the hardest job I’ve ever had.  It’s more of a vocation really, except it is a “calling” that I had to answer.  It turned out to be a prank call.  One of those where you don’t recognize the number on your phone but you pick up anyway only to get rooked into some kind of time-share scheme where you never recoup your investment.

I miss working.  I worked for thirty-eight years and old habits die hard.  I miss not making a contribution to something larger than myself.  I miss not having to get dressed up sometimes.  I miss solving problems.  And mostly, I miss the people.

My daily goal is now complex in its simplicity.  Be well – or well enough.  That sounds pretty easy but it is deceptively difficult.  Each day brings with it a new schedule. Sometimes the pain is there in the morning, sometimes I have a respite until evening.  It is unpredictable and I am not a spontaneous person.  There are unexpected momentum busts like cloudy days or rainy days or days that seem perfectly fine but send me running for the Orajel. There are the budget meetings that go on between my brain and my love of food that often end up in a stalemate.  And my co-workers – me, myself and I – really kind of bore me, and there’s one, the really responsible one, that keeps pushing me to do more but then tells me I still haven’t done enough.

No matter where our careers may have taken us, I think many people, especially those of a certain age, sometimes look back upon our early working days wistfully.  Our jobs weren’t ones we took home with us.  We worked at places like McDonald’s or the Gap or, like me, piercing ears at the mall (one of many jobs of my youth).  Now I look back at those days with a different kind of regret; the realization that even that job would be too much for me to handle now.   Plus, even if it only lasts a second or two, inflicting pain on someone else, especially in the facial area, is just something that I would no longer want to do.

I do take my job home with me these days.  I take my job everywhere with me.  And I hate the thought of my mid-year review.  That boss of mine can be a real bitch.

(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

This post has absolutely nothing to do with my life with Trigeminal Neuralgia but everything to do with how I became me.  A little self-indulgent perhaps, but I hope it resonates with some of you in your own personal way.

David Bowie died.  I woke up to the news dumbfounded and speechless. I didn’t know he had cancer.  I didn’t know he was purposefully staying out of the limelight.  I thought it was just one of those moments where he would take a break and enter back into the public eye in a different way than we had seen him before.  He has a new album out, heavily influenced by jazz, and I was looking forward to seeing him bring his own brand of debonair ease to the PR circuit.  It had been too long since we’d seen him and alas now we never will.

I can’t think about Bowie without thinking about my old house on Cherry Lane.  About what I was like when I was young.  But mostly I think about my mom, who like Bowie, died much too soon over ten years ago.  She was 68 when she passed.  He was 69.

Much of who I am has been informed by music.  My father, true to his roots, has always been a fan of opera, Tony Bennett and Frank Sinatra. While my mom, well, my mom’s playlist was pretty much anything but opera, Tony Bennett and Frank Sinatra.  It’s no wonder they divorced when I was eleven years old.

The radio was always on when I was growing up.  It served as the musical score for activities taking place in our kitchen – and in my house almost everything took place in out kitchen.  The Rolling Stones, Led Zeppelin, CSNY were among favorites when I was very young.  Eventually, AM radio gave way to a turntable from which bands like Genesis, The Boomtown Rats, XTC and Prince could be heard.

And then there was Bowie, played on heavy rotation, especially when I was in high school.  It wasn’t uncommon to come home from work to hear “Ashes to Ashes” or “Changes” blasting so loud it could be heard from the driveway.  If I had a new friend in tow, they would invariably say, “Your mom must not be home.”  “That is my mom,” I would reply while opening the front door to the full wall of sound.  And his sound was something that couldn’t quite be categorized.  It was amorphous without explanation and his fans were more than happy to go along for the ride.

It wasn’t just his music that drew my mother, and I, to Bowie’s talent.  It was the confident and effortless way he transformed himself from the androgynous Ziggy Stardust to a stylish punk in black leather to the suave performer in stylish suits along with many other looks in between.  He, as well as many other artists of the late-70’s, gave people like me permission to be different.  It wasn’t for difference sake alone but rather because it was an extension of the person that is me.  I grew up in an era where the preppy look was the standard and my sensibilities never connected with that style.  I didn’t dress the way that I did, all in black with heavy eyeliner to make some statement on society.  I just liked it.  It was how I felt most comfortable (and still is to this day).  And I was fortunate to have a mother who took pride in my being different.  I’ve always thought she lived somewhat vicariously through me in that way. That she took delight in raising a kid who didn’t buckle to the mainstream because although she looked every part a Mom, buckling to the mainstream was just not in her DNA.

The death of David Bowie doesn’t lay to rest those memories of mine, they will always be with me just as the many other memories I have of my youth.  But in musical terms, his death is something of a coda to the soundtrack that was so prominent in those days.  I will always love his music, but that loved turned bittersweet when my mom died.  Now I have another reason to feel melancholy, yet I am grateful for the indelible impression he made on my life nonetheless.  And of course, my gratitude toward a mom who didn’t try to change me is limitless.

Although British, one of Bowie’s best known song is titled, “Young American”.  At the end of the song, Bowie sings in a fast stream of vocals then the song sort of stops and the backup singers come in with the line, “I read the news today oh boy.”  It’s a moment in the song that no matter where I am, I always sort of take a pause and wait for it, and for the end of the song that commences afterwards.  Sadly, I read the news today oh boy, there will be no more new songs.  R.I.P. David Bowie.  May God’s love be with you.